I got a call from the pediatric gastroenterologist this morning about Evelyn.
She had the head of the pediatric dermatology department, regular dermatologist, and a dermatologist from out of state who specializes in diagnosing Celiac in those who have dermatitis herpeptiformis (the rash that Evleyn gets) all look at pictures of Evelyn's rashes and her file and all confirmed that they believe that Evelyn does indeed have Celiac disease.
None of them recommended putting her on the 2-3 day gluten trial to be able to biopsy the rash. That was a surprise to me.
What happens in DH is antibodies pool under the skin causing the rash and blisters. Over years of gluten exposure, the antibodies continue to pool in higher and higher numbers and cause the rash to show up more readily and easily and also make it harder to get it to go away. Because Evelyn is so young, she doesn't have the same years of damage that many with DH have. So, putting her on a couple day gluten-filled diet will produce a rash, but not high enough levels of antibodies to get conclusive results. They said the chances of a false negative are extremely high.
Putting her through eating gluten for several days would be challenging to deal with at best. It simply isn't worth it if we aren't going to have a for sure result in the end.
The doctor said she would pass along all the information to our primary doctor though and have it in her file that she is to be considered a Celiac based on the fact that so many specialists agree that the symptoms fit the diagnosis.
We will have to take her in for yearly blood work and growth measurements to make sure that she has low antibody counts and is absorbing food properly.
This also means that Bella has a 10% chance of developing Celiac disease as well. Evelyn's doctor recommended giving her small amounts of gluten while she is still breastfeeding once a month or so. Then we will just have to watch how she reacts and have her get the blood test as well once she is 2. She will have to continue to get the blood test every year while she is a child and every few years as an adult to make sure she isn't developing the same auto-immune response.
sounds "good",Liz - in terms of not doing a biopsy and the gluten trial. When I was diagnosed 11 years ago with DH, they wanted me to go through the endoscopy too - I fought it but eventually did it - even though a DH diagnosis is a Celiac diagnosis since all people with DH have Celiac (but not all Celiacs have DH).
ReplyDeleteI'm giving Josie a teaspoon or so of Barley cereal once per week with her babyfood. I hate having gluten in the house, but it's just until she's 1 and can have a goldfish cracker now and then in the nursery. Thanks for keeping us updated!